Any other helpful resources

I am looking for some advice from the experts here. Many of you have provided support and helpful information in response to previous posts and are familiar with my husband's journey thus far. He has recovered well from his surgery, is nearly 100% continent except for the occassional sneeze or cough, is pretty much back to his previous level of activity, returned to work yesterday, and his PSA at 3.5 weeks post op was down to 0.06. We are awaiting the results of the Decipher - he has chosen to not call to get the results sent directly to us - his decision. I suspect that the doc has received them and that they may indicate high risk, as we received a call today from the medical oncologist that he has been referred to at The James at OSU, for appointment scheduling. My current dilemma is related to my husband's continued belief that he will definitely die from this disease, despite the reassurance from his doc that he still has a chance for cure and that it is still more likely that he will die with, not of the disease. I do my best to stay positive and to continue to offer the reassurance. He is not the type to seek out support on a forum such as this or in a face-to-face support group - he is extremely private. He has always looked to me to do the research and study. I know he is the one with cancer, and I do have some understanding of what that does to you mentally (I had an ovarian cancer scare last year, but luckily my path after surgery was benign, although hyperplasia was present and I live with the chance that it will reoccur at some point in a malignant form). That being said though, I do not know what it is like to live with the diagnosis personally, my experience as his spouse, while scary as hell, is still not what he is dealing with. Are there any print resources or web resources that I can suggest to him that any of you who are living with this disease have found helpful? I cannot say that he is truly depressed, but I know he is scared even though he tries not to show it. He's always been strong, stoic, and silent when faced with adversity, but I think this situation is really wearing on him. Thanks for any guidance that anyone can offer.

Hi Nightingale, As far as what to read I would suggest The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer Paperback – January 31, 2018, If he hasn't read it yet it is well written and have some good information on his stage. I have a friend who is a G9. He had surgery six years ago, currently is on hormones and recently started chemo. He is receiving consults from both MD Anderson and the Mayo Clinic on clinical trials and treatment but has a Medical Oncologist close to home. He has continued to play tennis and stay active. It is important to do things you like and continue to enjoy life. Activity helps also you might consider having a counseling session once a week. You guys need to continue to support each other.

68 yrs., marathon runner, 14 of 44 IMRT @79.2, 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.

Post Edited (SantaZia) : 10/14/2018 4:43:42 AM (GMT-6)

I can't emphasize enough that this disease affects the mind as much as the prostate/body. I was referred to a psychologist who had cancer by an MO who has prostate cancer. Of course our personalities are probably different since you say he is so private but I decided I'd take all the help I could get in dealing with is sh**crap. Hope your hubby can realize help is good. My stats are worse than your hubby and I don't feel like things are hopeless. And there are many guys on this forum way worse than me. We have a chronic disease, not a fatal one. I'm guessing you guys will find tons of resources at The James. My sister-in-law had great experience there. I can email you the handouts I received if you like. Also look into relaxation techniques.

I'm just going to add to what the other guys said there's lots of us here with the same report as your husband so you guys are not in this alone. I don't know if you have looked at any of the nanograms but that would be good to do. Actually for 30 days after surgery that number was not too bad have to see where the next one is in another 30 days. I don't know of reading material myself but lots of guys on here could probably pass on some ideas. Get your husband out and do something fun that you used to do and let him know that you support him. He just has to realize that you guys have a new normal which includes PCA but that things will be ok. Man if he has gotten that good of control of incontinence that's huge most guys wait many months for that so things are looking good! Let us know how things are going

Larry

Hi Nytngale, my heart is with you...your husband's situation is so similar to what my husband is facing. He is just about 3 weeks behind, but stats and outcomes very close. And what you are feeling sounds so much like what I am feeling, including the dilemma of how best to support him.

I really don't have any good ideas yet. But I take inspiration from you, as it sounds like you are doing everything you can to stay positive and encouraging, including reaching out to others for guidance. I also understand that stoicism our husbands have, the wish to stay private, all that. It is who they are.

Some times I feel it's a fine line I walk, between staying positive (but not too perky) to being respectfully quiet (but not too dismissive). Like you, I simply am not able to feel what he's going through emotionally, I wish that I could, but I realize that we all process and deal with stuff differently. So I think for now (and those seem to be important words: FOR NOW, as in one day at a time), I try to keep things as normal as before. When I act calm and natural, it seems to make him more comfortable. Familiar and nice stuff, like favorite meals, time spent out in nature or with our animals, old silly TV shows or movies. Smiles & laughter, and affection. And I realize that when and if he wants to talk, that that will be the right time for him. Of all the things he's worried and scared about, it really hurts to think that he is also scared for me.

I hope that you guys get some positive news at your next appointment, and that your husband will be reassured that this is NOT the end, that there are lots of options still available. And hopefully a better feeling of control, and being grounded, instead of that scary drifty unknown state.

Take good care of you.
Barb

I have a dilemma...write a post that tells ii like it is...or wring my hands and gnash my teeth...see...a real dilemma...guess Ill just do a fast between the two options...that usually works..